Another Cancer Center Day Down

The Cancer Center has become a happy place for Izzy. She particularly loves to see Jessica (picture), a Childlife Specialist, who has been known to tell knock-knock jokes with Izzy for 2 hours straight if that's what she wants. Back in March I thought she would never become one of those kids playing happily between infusions of Methotrexate and Vincristine, but she has and it is so refreshing to see. It makes cancer days doable.


On a solemn note, one of our cancer friends, 5-year-old Gavin, spent his last day at the cancer center. He has had 3 bone marrow transplants, and they are not working. So "team Gavin" (his main nurses and doctors from the last four years all have a team shirt) sent him home with a hug and a smile but unfortunately not much hope for him to live out the month. We are constantly reminded of how wonderful Izzy's prognosis is, not to mention how great she's doing now. But we wish the reminders didn't come at the despair of others sometimes.

Her shots are almost tear-free now which is amazing. Her counts are staying high enough to continue. She's loving to swim, ride bikes, and play with the sisters. And riding Daddy like a horse is at the top of her list right now--it's great to have him home again :)

The Art Fair and Shot Practice

On Friday afternoon, we took the fam to the Ann Arbor Art Fair. It was a lot of fun walking on campus and downtown with the girls checking out the exhibits. The girls even spent some quality time in a fountain.



The blood thinning shots that we have to give Izzy every 12 hours to prevent seizures have turned out to be pretty horrific. Our system is to have Izzy in Kerri's lap. Kerri holds her/pins her down while Dad administers the shot. We got some advice on the least painful way of giving it to her, but to be sure I made Kerri practice on me. She tried a couple of different ways of poking me with the needle. Then Kerri might have ;) injected the blood thinner, and the blood thinner might have ;) burned like the devil himself stuck me with his pitchfork for about a minute. The poor kid has to go through it twice a day. Below is the shot of Kerri practicing, and my legs are not that white in real life--curse you camera flash. :)

Seizure Pictures

Cory posts... Great news. We got Izzy home from the hospital, and the test results came back that there was no permanent damage from the seizure. Here are some of the pics from the last two days and one of the freakiest pics you'll see of the 911 team--they did an amazing job--and Izzy in seizure. (See last blog post for details)

911 team and Izzy's hollow stare during her seizure


The EEG test to make sure that the seizure wasn't still happening


Scarfing down some soup after the battery of tests was done today

Seizure

We are still at the hospital, but I wanted to share our story since I can't call everybody:

Wednesday at about 2:00 Izzy suddenly stopped playing her game with Lorin and she turned her head away. Lorin and I were perturbed that she was being a turkey about the game. So I told Lorin to go do something else and quit trying to coax Izzy to play. When Lorin walked away I expected a protest from Izzy, but she remained unmoved, upright in her chair with her head turned to an extreme angle up and to the right. With a hint of worry, I picked her up and carried her to sit on the couch with me. I turned on cartoons and laughed at something silly, sure it would get her attention and she would turn to watch. When she didn't I looked at her eyeballs and they were fixed, unblinking in the top right corner of her eyes and her head still cranked up and right. "Izzy you're scaring me. Can you look at me and tell me you're ok?" ...no response...just a hollow stare. I turned her head toward me and it moved easily, but not her eyes. I knew I had to get her to the ER. Then I thought again and called 911 telling them that I thought she was having a seizure or something. Within minutes the firetruck showed up, then the ambulance, and all of a sudden there were 6 or 8 ER team members working on Izzy. 5 more minutes and Izzy and I were in an ambulance with the alarm blairing through the streets and the driver yelling back to the 2 working on Izzy warning them of each turn. It seemed like an hour, but soon we were in the ER with 20 more doctors and nurses waiting to restore her. Thankfully she began to fight with them and cry, her eyes now tight shut, wandering where she was and how she got there. 8 hours later Cory arrived (was able to fly in from Arkansas within our time at the ER) and at about that time we moved from the ER to good ole' Mott 7.

Today she is back to normal! Wow! What a miracle! Yesterday, before her seizure she told me she thinks heaven would be a great place to go, and I wonder sometimes how close she must feel to heaven and her Father there. Right now she is our little angel and we're hanging on to her.

So, EEG (pictures will come when I get home), MRI, MRA, MRV, no eating for about 22 hours now (she's still in the MRI room) and she has finally lost a little of her patience, but smiles in between telling me what she wants to eat first and then second and so on.

Lorin and Ryan got to spend some quality time with the firetruck team until friends showed up and took them for the evening. At midnight I was able to pick them up both sound asleep. They're hanging in there like champs (of course plenty of worried questions from Lorin as she witnessed all of the trauma).

Finally, the plan to reduce further seizure risk is for me to give her blood-thinner shots twice a day at home for at least a couple of months (that's right...me give her shots). The Chemo called Asparaginase causes blood-clotting issues (which is the assumed reason for the seizure) and will stop being given at the end of the two months. Doc said he's giving me my nursing degree when this is all over. I told him I don't need it, I call all the shots with or without it :)

Thanks for your prayers and thoughts. We feel very loved!

Yeeehaw!

Did a great job with her mask on the airplane.
Cousins, gotta love 'em!
Showing off her "cute little bubble."
Sandbox fun with Aunt Ali and the sisters.

Izzy and I just got back from Idaho and Utah last night, again parting with Cory (back to Dallas) and Ryan and Lorin who stayed with Gma and Gpa Costley. Izzy got to milk a cow, chase goats, pick peas, swim a lot, and get lots of lovin' from all the peeps that have missed her so much. Although there were some puking family members and others with fevers, Izzy thankfully stayed healthy the whole time.

Now back to the grind. Today her platelets were too low for her scheduled procedures (spinal tap, chemo) so they pushed us back another week. So 4 months left of the intense 6 1/2 months which has turned into 7 months due to the 2 setbacks we've had. (confusing? Sorry.)

On Friday she is getting an EMG (follow-up tests to make sure they know what caused her speach issues 2 weeks ago) which consists of them poking needles into her muscles to see how her nerves react. So it will be a tough day for her, darn it.

We're hanging on tight to the memory of the 10 days they gave us--thanks to everyone who made them so great!